Part 10: Practical Tips to Ease the Way (Section 2 of 2)

by
Shari (Zissie) Gitel
zissieg@walla.com

Now it’s time to discuss tips for keeping the patient well-dressed, fed, comfortable and occupied. Sounds easy, right? Well, with a little ingenuity and a lot of determination it isn’t all that hard. Let’s get started.

Fashion Design and Physical Education 101
If the patient is able to dress him/herself there are some nifty contraptions to aid the process. There is a device to help patients put on their socks without having to bend down to do it. Long shoehorns help with getting shoes to slide onto the feet. Avoid shoes with laces or buckles. Slip-ons or shoes with Velcro closures are the easiest to handle. Shirts, trousers and skirts without buttons or zippers speed up the dressing process. Simplicity is the name of the game, not haute couture.

In the event the patient is wheelchair-bound and sedentary or supine most of the day, you’ll need to protect the patient from pressure sores. Special pillows for chairs and air mattresses, which require electric pumps to keep them inflated, for beds help prevent these sores. There are many types of wheelchairs, some with reclining padded high backs and legs that can be raised to elevate the patient’s legs. Trays can be acquired to attach to the wheelchair. The patient should be encouraged to change positions several times during the day to prevent the same area of the body from receiving the bulk of his/her weight continuously. In hospitals, they place a folded flat sheet under the trunk of the patient’s body to help pull the patient up in bed or turn him/her over. This is a two-person job.

PREVENTING PRESSURE SORES IS A MUST!

Doorways in many homes do not accommodate the width of a wheelchair, walker or commode chair. Many homes do not have elevator access, or ramps. If your home falls under one of these categories, check with Lishkat HaBriyut to see how to qualify for altering your home to meet the patient’s needs. If you must carry a wheelchair-bound patient up or down stairs, it is easier to transfer him/her to a sturdy arm chair first. This greatly reduces the weight you will have to lift, as the wheelchair alone can weigh as much as 40 pounds or more. Again, this is not a one-person job.

Home Alone
If the patient is on his/her own for any portion of the day he/she may benefit from a long-handled reaching device—either to reach something on a high shelf or to pick something up off the floor. It is also worthwhile to bring in a professional to advise you on how to redesign rooms to make them patient-friendly. Cabinets, drawers, height of furniture—just about everything imaginable—come under this category. Eating and food preparation utensils can be purchased that make life easier for patients with manual dexterity problems. For patients who have difficulty swallowing thin liquids, there is a food thickener on the market that can be added to the liquids. For people who have difficulty getting food and drinks into their mouths spillage on clothes is a common occurrence. You may want to invest in disposable bibs for adults. If food preparation is a problem, many organizations and companies provide meal deliveries to the home, some of them subsidized according to the patient’s ability to pay.

Some other items you may want to have on hand, depending upon the patient’s condition are a blood pressure machine and inhalation machine. And let’s not forget one of the most important items: an alarm system for the patient to call for emergency help.

Patients with dementia should be taught to always put things back in their proper place: keys on a table by the door, glasses next to the bed, money in his/her wallet, etc. It takes a lot less time to spend an extra minute or two replacing the items in their proper location than spending several minutes or sometimes even hours trying to locate them. Carefully label items that the patient may have trouble identifying. Monitor the patient’s medications. There are medicine boxes of all types on the market for this purpose. Depending on the degree of the patient’s dementia, you may not want to give him/her access to medications at all.

WORDS TO LIVE BY: A PLACE FOR EVERYTHING AND EVERYTHING IN ITS PLACE!

Leisure activities should be encouraged to keep the mind and body sound. I have found that a discman/tape player with headphones (my daughter says I’ve dated myself and should really recommend an iPod) is a handy entertainment center. Whether it’s music, audio books, or lectures, the patient is bound to find something that will hold his/her interest. Large print books are available for the visually impaired. There are also many assistive devices to help the visually impaired enjoy the use of TVs and computers. Playing cards come with large numbers on them. If the patient can handle them, give him/her games to exercise the mind, such as Jumble puzzles, Sudoku, crosswords. These are readily available on the internet and can be printed in large type or enlarged on a copy machine to facilitate use by the patient.

Make sure the patient regularly exercises his/her body to the best of his/her ability. Keep those extremities limber and strong. Muscle atrophy is something you really want to avoid. You can purchase an elastic sash from your kupat cholim’s physical therapy department (at least that’s where we got ours). When the ends are tied together the sash, looped around the ankle and held in the patient’s hands, acts as an aid to the patient to raise his/her legs while sitting, thereby exercising the muscles. It can also be used in arm exercises, providing resistance as the patient stretches against it. Again, this is something you will want to discuss with the patient’s physical therapist.
Tricks of the Trade
For us, the caregivers, I also have some tips. Continue to breathe in and breathe out. This will keep us going for the short term. I found a little trick which works wonders for me, and I’m considering patenting it. Previously I mentioned how much benefit I received from reflexology. For those who are not familiar with reflexology, it involves the therapist pressing and massaging different areas of the foot which correspond to different areas on the body. After every session I felt extremely relaxed. One day I said to myself if my feet being relaxed makes my body relax, let me try an experiment. I am about to share my discovery with you. It’s something you can do any time day or night, and no one need even know you’re doing it. For me it provides instant relaxation. All it involves is wiggling your toes. Try it. When I wiggle my toes, my forehead relaxes and my back and shoulders are less tense. I hope it works for you, too. Another technique I have employed when I find myself clenching my jaws or grinding my teeth is repeating the letter “N” over and over. This relaxes the jaw and facial muscles. You may, however, want to practice some discretion in where you perform this particular exercise. Otherwise, people around you may decide you’re a good candidate for institutionalization! And do find time for yourself to get out and exercise to keep those endorphins flowing. Laugh as much as you can, because laughter is truly the best medicine.

This whole adventure in writing my blog itself has been therapeutic for me. I don’t know how helpful it has been for you (I sincerely hope it has been), but for me it just felt great to get a lot of things off my chest and transferred to paper. Perhaps writing down your frustrations and feelings can do the same for you.

Finally, I would like to thank the Yad Sarah organization for giving me this opportunity to enlighten the public on services for the disabled and elderly. Most of the assistive items and services I have mentioned in my articles are available through Yad Sarah. I strongly recommend you visit the Yad Sarah website (http://www.yadsarah.org/). If you live in Israel, I hope you take advantage of the many services Yad Sarah provides, visit the Guidance and Exhibition Center, volunteer for the organization or support it in any way you can. If you are among my readers from abroad, perhaps Yad Sarah can act as a model for a similar organization in your own community. Contact Yad Sarah to find out how their representatives can help you. Visit the headquarters in Jerusalem. You’ll enjoy a tour like no other you have ever experienced.

I hope you’ve enjoyed reading my blog as much as I have enjoyed writing it.

Shalom for now.

Guide to Services for the Aged and Disabled in Israel
© Copyright-2008
This work is protected by copyright law. Use of this work or any portion thereof, including photocopying, publication, public production, distribution, translation, broadcast, allowing public access to it, and utilizing portions derived from it for other purposes, without prior written permission from the author is prohibited.

Part 10: Practical Tips to Ease the Way (Section 1 of 2)

by Shari (Zissie) Gitel
zissieg@walla.com

Introduction to Interior Decorating 101
My pediatrician had a good sense of humor, and his tip regarding how to care for teething babies was unique. In fact, this tip was useful under a variety of circumstances. He told me that if the baby cries for a long period of time due to pain from teething, this is what I should do: fill a shot-glass full of bourbon or rye or scotch and dip my finger into the liquor; then rub the liquor on the baby’s sore gums. The alcohol will almost always relieve the pain. If the baby continues to cry after this procedure, however, I should then proceed to drink the remainder of the liquor in the shot-glass. I told you he had a good sense of humor. Well, as we all know, this is not a very practical tip for handling that problem or any other problem. But I have learned a lot of tips both from my experience and the experience of others that can make the home and environs more user-friendly for people with mobility problems. I’d like to share some of these tips with you.

THERE IS NO SUBSTITUTE FOR A PROFESSIONAL THERAPIST’S ASSESSMENT AND INSTRUCTION BASED ON THE NEEDS OF EACH INDIVIDUAL PATIENT

Before I share these tips, I should caution you that in any event you should have a qualified occupational or physical therapist from the patient’s kupat cholim evaluate the situation and recommend the necessary equipment and environmental alterations needed for the patient’s particular case. This is no substitute for professional medical advice. Any links to specific sites for sale of such equipment are for demonstration purposes only, not an endorsement of any particular company.

How to Achieve a Standing Ovation
Probably the most important item we introduced into the home was a sturdy office-chair with arms. Some patients may be able to push themselves up by simply placing the palms of their hands on their thighs and pressing on their thighs to gain the strength to stand. Post-stroke patients who have lost use of one side of their body have great difficulty in standing up. Placing their hands on the chair arms helps them boost themselves to an upright position. Likewise, raising the height of the chair seat, either by placing a firm cushion on it, or by purchasing specially made cones that fit under the chair legs, makes it easier for the patient to rise to an upright position.

The same holds true for the height of the patient’s bed. Getting in and out of bed can be very difficult with no support on the sides to hold onto. A raised mattress somewhat alleviates the situation. There are also bars (similar to but smaller than the types of bars used to keep children from falling out of bed) that can be inserted under the mattress and act as a support for pushing up from a sitting position at the edge of the mattress.

While we’re on the topic of the edge of the mattress, it is important that the patient learn how to scoot forward to the edge of the chair or bed before attempting to stand up. An occupational therapist can instruct the patient in all the steps necessary to properly stand up from a sitting position. If the patient still has difficulty achieving this on his/her own, you can assist the patient by placing your hand on the small of the patient’s back and applying gentle pressure to give him/her that extra nudge forward to be able to rise. Unless you really enjoy the experience of back pain, try to refrain from pulling the patient up by yourself.

Cars present a special challenge. The car seat’s proximity to the ground coupled with the need to maneuver the body until the feet are in the proper position for either sitting or standing pose difficulties for the patient. Bars are available for installation into cars to enable the patient to grasp onto something while either attempting to sit in or rise from a car seat. I personally have never used these bars, so cannot vouch for their effectiveness. There are also swivel discs (like a turntable) that can be placed on the car seat to help the patient maneuver in the seat and position his/her feet correctly.

Then there are toilet seats to deal with—can’t do without them, can we? Booster seats are available for toilets. Some have a hole and plug in the plastic where you can fill the seat with water, the weight of which helps stabilize the seat on the toilet. I came up with a Velcro solution to keep the seat I bought stabilized, gluing a piece of Velcro to the toilet bowl in several strategic spots, and matching strips of Velcro on the booster seat. I then cut a third piece of Velcro for each of these strategic spots and joined the booster seat to the toilet bowl that way. This kept it from sliding around. Necessity is the mother of invention, they say. Another important item near the toilet is a bar attached to the wall. Utilizing the bar the patient can more easily pull him/herself up from the toilet seat. There are also other bathroom solutions available, such as a U-shaped bar that can be placed surrounding the back and sides of the toilet to act as arms for the patient to use to help him/herself stand up, or a commode on wheels (similar to a wheelchair) that can be pushed to the toilet without the patient even having to stand up. These commodes also come with removable bed-pans. OK, that’s enough about the toilets. I think I’m going to lose my audience if I dwell on this subject any longer.

As long as we’re in the bathroom mode, let’s talk about showers. Many patients will need to be seated during a shower. The commode mentioned above can double as a shower chair, or you can use a regular plastic garden arm chair with holes drilled into the seat to prevent a buildup of water while showering the patient. Next to the area where the patient is seated or standing there should be a bar on the wall. A slip-free floor surface is also recommended. It is difficult to shower the patient with a stationary shower-head, so if your bath is not already equipped with a hose type shower-head that can be directed to different areas of the patient’s body, you’ll want to invest in one of these.

TOSS THOSE CARPETS!

Just a-Walkin’ Through the House
Now that we have the patient clean and standing, let’s discuss how he/she is going to walk around. First of all, carpets and throw-rugs are a “no-no”. Not only is it harder to push a walker on a carpeted surface, it’s just too easy for a patient to stumble over the edge of one. So roll them up and get rid of them. Some patients may need no assistance in walking. Others may manage with the assistance of a simple cane (make sure to purchase a cane that is the correct height for the patient). A cute device that can be added to the tip of the cane is a rubber contraption that allows the cane to remain upright. It’s called a tripod. A cane equipped with this makes life easier for the patient: he/she no longer has to find a wall against which to lean the cane, or a chair on which to hang it, and, should the cane topple over, the patient need only press on the side of the rubber tripod with his/her toe to bring the cane back up to a vertical standing position. Brings back memories of those bop-bags we used to punch down and watch pop right back up.

If the patient requires a walker, be sure to adjust the height of the walker to suit the patient’s needs. There are both folding and non-folding walkers, the latter being more sturdy, the former more easily transported in cars. Tennis balls placed on the back legs of the walker (you have to work hard at slitting and prying them open to fit them onto the tips of the walker) make for a smoother glide across the floor. Replace the tennis balls periodically, as they get worn. You can purchase accessorized walkers that come with seats, and baskets are available for the patient to tote things along with the walker. The patient will tend to want to use the walker as support for standing up from being seated. Some physical therapists will say this is the proper way to stand with one hand on the walker and the other pushing up from the seat, and others will discourage it. Follow the advice you receive from your own physical therapist.

I think now would be a good time to take a break from discussing all this equipment. It’s time for a breather. Look for my post next week with the remainder of the tips I have accumulated from my experience—I know the suspense is mounting, but hang in there: there will be more help and advice on the way.

Guide to Services for the Aged and Disabled in Israel
© Copyright-2008
This work is protected by copyright law. Use of this work or any portion thereof, including photocopying, publication, public production, distribution, translation, broadcast, allowing public access to it, and utilizing portions derived from it for other purposes, without prior written permission from the author is prohibited.

Part 9: The Gamut of Emotions—Lessons in Living

by
Shari (Zissie) Gitel
zissieg@walla.com


Why Me?
One of the greatest lessons I have learned from this whole experience is that there are many aspects of life over which we have no control, and when faced with any of them, if we don’t put things into perspective we waste a tremendous amount of energy on misguided anger. How much anger I expended at the beginning of this experience! I was wallowing in self-pity and angry at everyone and everything. Woe unto anyone who got in my path. Just ask my husband! My tongue developed a mind of its own and lashed out at family and friends. No one could do or say anything right.

It didn’t happen overnight, but slowly, very slowly, I learned how to put things in perspective and accept the situation for what it was. Initial anger is certainly understandable. The natural question “Why me?” is the first one to pop up, both for the patient and the caregiver. When you think about the question, though, in an objective sense, the corollary is “Why not?” Do bad things only happen to other people? What is so special about me that I should merit exemption from diseases, accidents, or any other traumatic event? Isn’t it rather self-centered and childish to think that if I’ve behaved well I shouldn’t be punished in this manner? The trick is to reassess the situation and not consider it a punishment—turn it into a challenge and a means of bettering yourself.

Consider the situation a challenge—not a punishment

Sensitivity Training
I do not in any way mean to trivialize the difficulties patients and their caregivers have to endure or the hardships visited upon anyone. The vagaries of life seem to conspire to produce an endurance test and a challenge where sometimes the hurdles seem insurmountable. Attitude, however, can make all the difference. Acceptance of the circumstances, I believe, is the first step to development of a constructive attitude to aid in coping with daily challenges. Once I resigned myself to the fact that this is what life has in store for me, I decided there must be a reason for what had been visited upon me and asked myself what I could learn and gain from the experience?

Sensitivity to the feelings and obligations of others has been a by-product of this whole experience for me. Though it took me a while to attain this level of understanding, I feel more attuned to the moods and needs of my parents and better appreciate the time and geographical constraints that prevent many family members from visiting more often. I enjoy the luxury of being retired. As small as the world has become, it is still no mean feat to find the money, time and energy required to travel long distances when one has to contend with work and children.

UNSOLICITED ADVICE?JUST SAY “YES”.

At the other end of the spectrum there are those who feel they must insert themselves into the picture and know better than I what is best for my parents. They will not hesitate to make suggestions and offer criticism. Annoyance with these people and their intrusion into my personal affairs was my gut reaction. It takes a great deal of self-control to refrain from telling them to mind their own business. I was raised to be courteous, and I courteously let them know how much I appreciate their concern. Then I just go on doing what I consider is in my parents’ best interests. The advice I received long ago from my pediatrician right after our first child was born has served me well over the years. He warned me that everyone was going to tell me what I was doing wrong in caring for my baby and how it would be better if I did things their way. His advice to nod my head ‘yes’ as though I was agreeing to all their suggestions and then proceed to follow my own motherly instincts was one of the best recommendations I ever received. So, here I am utilizing that same advice in a reversal of roles—what served me well then, continues to serve me well now.

Role Reversal and its Toll on Emotions
This issue of role reversal is laden with emotions in and of itself. Whereas once I relied on the sage advice and care of my parents (other than in my teen years, of course), now I am obliged to take responsibility for their needs and make decisions affecting their lives. I am changing them and feeding them and lifting them in and out of a car. It is an awkward position to be in to say the least. Often the obligation of respecting their dignity and wishes clashes with the ethics of assuring their physical well-being. Their understandable desire to want to die already and not have to endure the indignities of not being able to handle their own affairs and physical needs hurts me to the core. I don’t want them to suffer, yet I don’t want them to leave me either. As a defense mechanism I have developed a rather hardened façade so they don’t see how much they are hurting me. I do not make light of their wishes, but I do try to get them to know how much I understand how they feel and encourage them to make the best of the situation.

Often this requires putting on a face of cheer and demonstrating an attitude of hope that in reality are totally false. We are cautioned not to rely on miracles, and there is no medical reason to believe that my parents will recover from their illnesses or see any improvement in their condition. Reality dictates otherwise. In the early stages of these trials I went through a phase of denial. I pushed and pushed to get my father to put more effort into his rehabilitation. I did whatever I could to exercise and medicate my mother’s mind to ensure that whatever faculties she still had would remain intact. It became easier to cope, however, once I accepted the situation and resigned myself to the fact that my parents just weren’t going to get better.

ACCEPTING REALITY AIDS IN COPING

Have you ever been to Venice? One of the tourist attractions there is the “Bridge of Sighs”. It is a bridge over one of the canals that leads to the jail cells from which there was no return for the criminals sentenced to imprisonment. Well, I have my own Bridge of Sighs. After every visit with my parents in the nursing home I leave with a sigh of frustration and helplessness. I am already experiencing the feelings of grief at having lost them. Their personalities have changed as have their actions. They simply are not the parents I remember. Sigh....

To family members who speak to me after visiting my parents and express how upset they are with the rapid deterioration in my parents’ condition, I must seem very uncaring. They, however, see the situation on a very infrequent basis, whereas I see the situation regularly and have become somewhat inured to it. What they don’t understand is that I am already beyond the sorrow and the grief stage of losing my parents. Their decline is something I take for a given now, and what may appear as nonchalance on my part regarding their condition is simply my way of demonstrating that I have already cried myself out and worn myself out in caring for them. I will put on a happy face for my parents and continue to boost their spirits, but I know in my heart of hearts that I have lost them already. If that’s hard for others to fathom, so be it. I have accepted the situation. This is my way of coping.

Faith and future
Fear is another emotion I have begun to experience. It has nothing to do with the caregiving that has played havoc with my state of mind; rather it is a result of thinking of all the genetic probabilities that point in the direction of my one day being in the same condition as my parents. My chances for developing cancer and/or dementia are looking pretty good. The thought of being on the receiving end of the caregiver process is not tantalizing to say the least. I only hope that if and when that time comes I will be able to accept the help graciously. My children are aware of my wish that I not be a source of their having to put their lives on hold to take care of me. If I reach the stage of needing such demanding care, they have their instructions to get on with their lives and hire others to care for me.

Issues of faith often come to the fore when life deals you a severe blow. It’s easy to become agnostic when one feels he/she is not deserving of what appears to be God’s punishment. It is so much more dignified, though, to utilize the experience as a means of building character, demonstrating to the world courage in the face of disaster and perseverance in the face of adversity. Despite all the setbacks and sometimes humiliating circumstances my parents have had to confront, they have managed to maintain a sense of humor and keep on going, albeit somewhat reluctantly. They find pleasure in the little things in life—a violin concert, listening to anecdotes about their great-grandchildren, and visits from family and friends.

As for myself, the experience has taught me important lessons that I believe have improved my character. I have gained a greater respect for the elderly. I have learned to exercise a patience that I never before knew I had. I have overcome severe depression and learned to prioritize and put things in perspective. I have learned to be grateful for all the precious moments granted to me. Rather than losing faith, I have learned to pray harder than ever that God continue to grant me and my loved ones His many favors and have learned to look around and recognize just how many favors He has indeed granted us.

My advice to you is to be grateful for every single day and utilize it to its fullest. Who knows what tomorrow may bring? Carpe diem—and don’t look back.

Sites for suggestions on how to cope with emotional turmoil:

http://www.nia.nih.gov/Alzheimers/Publications/coping.htm
http://www.webmd.com/alzheimers/features/caregiver-grief-triggers-mixed-emotions
http://www.ec-online.net/knowledge/Articles/emotions.html
http://www.dshs.state.tx.us/alzheimers/hints.shtm
http://familydoctor.org/online/famdocen/home/articles/589.html
http://www.bbc.co.uk/health/conditions/mental_health/emotion_index.shtml

Guide to Services for the Aged and Disabled in Israel
© Copyright-2008
This work is protected by copyright law. Use of this work or any portion thereof, including photocopying, publication, public production, distribution, translation, broadcast, allowing public access to it, and utilizing portions derived from it for other purposes, without prior written permission from the author is prohibited.